Overview

Disclosure of HIV status is an important part of the process of living with HIV, and is crucial to continuum of HIV care. Disclosure decisions are particularly complex when children are involved because of concern about children's emotional and aptitudinal ability to understand and cope with the nature of the illness, stigma, family relations and concerns about social support. Parents and caregivers are often uncertain how to counsel about disclosure, and opportunities to provide HIV testing and care, and to help families start the discussion about living with HIV are often missed.

WHO has developed this guidance for healthcare workers on how to support children 12 years of age and younger, and their caregivers, on disclosure of HIV status. The guidance is intended as part of a comprehensive approach to the physical, emotional, cognitive and social well-being of a developing child following the child's own diagnosis of HIV or that of a parent of close caregiver.

Contents

• ACKNOWLEDGEMENTS
• SUMMARY DECLARATIONS OF INTEREST
• ABBREVIATIONS AND ACRONYMS
• EXECUTIVE SUMMARY
• 1. INTRODUCTION
  • 1.1 Objectives
  • 1.2 Target audiences and scope of the guidelines
  • 1.3 Background
• 2. METHOD
  • 2.1 Identification of need
  • 2.2 PICOT questions emerging from initial steps and reviews
  • 2.3 Literature review
  • 2.4 Analysis
  • 2.5 Consensus, external review and updating
  • 2.6 Dissemination and future support
  • 2.7 Review and development of other materials
  • 2.8 Future revision
• 3. FINDINGS
  • 3.1 PICOT Question 1: Full disclosure versus non-disclosure
  • 3.2 PICOT Question 2: Disclosure by the caregiver versus disclosure by other persons
  • 3.3 PICOT Question 3: Identifying a safe person with whom the child or caregiver can freely discuss HIV-related issues
  • 3.4 PICOT Question 4: Assistance from HCWs specially trained in disclosure to children versus assistance from HCWs with standard training
• 4. CONCLUSION
• ENDNOTE REFERENCES
• APPENDIX A SEARCH STRATEGY
• APPENDIX B Do HIV positive children 12 years and under whose HIV status is disclosed to them display equal or greater well-being than those children who are not disclosed to?
• APPENDIX C Do HIV positive children 12 years and under whose HIV status is disclosed to them display equal or greater well-being pre- or post-disclosure?
• APPENDIX D CHILD REACTIONS TO DISCLOSURE
• APPENDIX E Do children 12 years and under who get the HIV positive status of their parent/caregiver disclosed to them display equal or greater well-being than those children who are not disclosed to?
• APPENDIX F Do children 12 years and under who get their parent/caregivers' HIV positive status disclosed to them display greater or equal well-being pre-to post-disclosure?
• APPENDIX G Child reaction to parent/caregiver disclosure
• APPENDIX H Do children whose parent/caregiver HIV status is publicly known display greater to equal well-being to community control compared to children whose parent/caregiver HIV status is confidential?
• APPENDIX I Example disclosure models/ approaches presented by Guideline Group members at the consultation meeting, June 2009
• APPENDIX J IMPLEMENTATION PLAN

The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.

The mention of specific companies or of certain manufacturers' products does not imply that they are endorsed or recommended by the World Health Organization in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters.

All reasonable precautions have been taken by the World Health Organization to verify the information contained in this publication. However, the published material is being distributed without warranty of any kind, either expressed or implied. The responsibility for the interpretation and use of the material lies with the reader. In no event shall the World Health Organization be liable for damages arising from its use.